The Shadow of Stigma: A Patient’s Perspective

When does darkness begin to turn into light? Steve Colori offers a firsthand account of his experiences living with schizoaffective disorder.

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One of the most difficult parts of having schizoaffective disorder was learning how to reintegrate into society. From age 19 right up until age 24 I had spent most of my time in isolation because I wasn’t well enough to functionally interact with others. Living in isolation for a duration of time put me out of touch with social customs, norms, and socially acceptable and unacceptable ways of speaking and acting. While recovering and living with the disorder stigma created a barrier between myself and others which hindered my progress in rehabilitation.

Although most people aren’t public about the issues that are bothering them they usually do have close family or friends that they can speak to about anything. Stigma eliminated the number of people I could speak to about my issues because many of them were socially taboo or unacceptable. I also had issues which I felt may be embarrassing to share with others. These were problems I had come to accept and I wasn’t internally embarrassed about them but I was more concerned with how people would react and treat me if I shared them. I avoided sharing the problems I deemed socially taboo.

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Occasionally I shared socially acceptable stories about my hospitalizations with people who knew about my illness and were still hanging out with me but they made an effort to change the subject and to discontinue these conversations. I know stories of this nature changed many people’s perception of me and they thought of me in an awkward light.

There is a time and a place to share this type of information and part of my problem was learning that but there were also times I chose the right circumstances and many people were simply unwilling to help me; including a good number of people I had known since pre-school. Schizoaffective disorder has a lot of stigma surrounding it and I’ve had two occasions where I had been hanging out with a new group of friends for over a year, I told them about the illness, and they stopped returning my calls to hang out.

Although I am able to see a therapist for one hour per week, that hasn’t been nearly enough time to address all the issues I’ve had to face. The fact that the therapist was the only person I could speak to about the past five years of my life left me feeling guarded about information regarding schizoaffective. I was forced to become my own best resource because there has been no one else I have felt comfortable talking through issues with. This prolonged recovery because I had to develop resources and tools such as introspection, metacognition, self-honesty, critical thinking, long-term memory, and courage. This took time. With the help of my doctor I eventually progressed to a point where I could identify an issue within my own psyche and eliminate it.

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It’s important to note I have schizoaffective disorder to thank for a great deal of thinking skills I’ve developed. Other than my therapist I felt I was the only person I could turn to for help, and I still feel this way. I gained confidence in my ability to process information and solve difficult problems and I also gained a lot of wisdom. However, not everyone develops these skills and resources and they are left to constantly weather a ferocious storm, that being the symptoms, trauma, paranoia, anxiety, hallucinations, lack of mental and physical functionality, psychological and emotional burdens, and the lack of social skills which a schizophrenia-type illness and other mental illnesses usually cause..0

About a year after my second episode, I began making friends again but relating to them was somewhat difficult initially. Naturally, people asked me normal social questions about my life in college and about the previous several years of my life and I had to scramble to come up with answers to ensure my diagnosis and any hints of it weren’t disclosed. I eventually progressed to a point where I usually talked about things that were relevant to the present, avoided talking about my past, and I also made certain to ask people questions about themselves or talk about things unrelated to myself. I always felt like a double agent because I had a wealth of knowledge and information about thinking and psychological issues which I felt disinclined to share; mainly because I thought it would lead to questions which would eventually lead people to ask questions that would inform them I have schizoaffective disorder.

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Having lost all my friends in college and then having lost two groups of friends by disclosing my diagnosis after my episodes caused me to keep people at a distance. I had friends who would say they love me and I sometimes didn’t respond or I would reluctantly say I love you too, but I never wanted to fully commit to anyone because I was afraid I may lose that person. I eventually decided to disclose my diagnosis to people I’ve known for a while. One of my best friend’s mom has schizophrenia so I decided I would try disclosing my illness to her thinking she may understand. Until I divulged this information it seemed we were beginning to part ways.

Ironically, we grew closer and as I improved and advanced in my recovery our friendship also grew stronger. I have three other friends who I have similar relationships with but it still gives me anxiety to talk to them about difficult issues. Many times though, there are stories from my episodes that I just want to share with someone and I at least have these people and my family who I can share them with. It’s really helpful for me to be able to share information about difficult times in my past. Sharing personal information I’ve withheld for years and discovering I’m still accepted and very much liked has been really empowering.

I still use discretion with what I share. Having this ability makes me feel there are people in my life who care for me and aren’t going to leave me. It has also helped me to open up and talk more about myself. For years I never wanted to talk much at all about myself but I’ve felt more inclined to share my true thoughts and disclose information more so than ever.

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As a patient, another difficult facet about having a diagnosis is not truly understanding what the illness is. It took me years to understand that schizoaffective disorder is only what I’ve experienced and nothing more. My stigma from popular culture sometimes lead me to believe there was something phenomenological about the illness that couldn’t be defeated but that simply isn’t the case. I was afraid there were unknown facets of my illness that would come to fruition at some point but this has never happened. Addressing this stigma helped me realize that I already know what schizoaffective is. This eliminated a great deal of fear because I have a sense of what to expect and I also know how to deal with most of it.

In Japan, schizophrenia is called integration disorder, which is a far less stigmatic name for it. Integration disorder accurately describes the nature of the illness and the effects the symptoms have had on me. Schizoaffective has never caused me to be a wild man or harm anyone or do anything criminal. I usually isolate when I’m not feeling well. The disorder has simply inhibited my ability to function within a society and enjoy the company of family and friends. I’m a functional individual within society who has a full-time job, a great family, great friends, a girlfriend, and I get along well with most people.

About Steve Colori

Steve Colori was born in 1986 and has had schizoaffective disorder since age 19. While attending undergrad he developed schizophrenia which was later diagnosed as Schizoaffective Disorder. Over the years he has worked hard to overcome the disorder. Steve has published seventeen essays with Schizophrenia Bulletin by Oxford Medical Journals, he has lectured for McLean Hospital’s Harvard Medical School Resident doctors regularly and throughout the Greater Boston Area, he has a memoir titled “Experiencing and Overcoming Schizoaffective Disorder” and he has been featured in a number of literary journals. Over the years he has worked hard to overcome the disorder and he has come to live by the words "To Improve is to Change; to Be Perfect is to Change Often" (Winston Churchill) To read more of his work and to buy his memoir please visit SteveColori.com.